Everything You Wanted To Know About Hysterectomies & Endometriosis

March is Endometriosis awareness month. Last year I wrote a much different blog post for Lunapads.Since then – and after much soul searching I have had a full Hysterectomy. Here’s a post reflecting on my recent procedure.

Hooray I made it!

It is 8 weeks since my full hysterectomy. After a long struggle with endometriosis and later adenomyosis, and after exhausting all treatment options, I decided on a hysterectomy. It was not an easy decision but by that point I was truly ill. I had to be very careful with anything I ate as I could end up feeling deadly. I had pelvic and abdominal bloat, and pain that was unbearable on a good day and left me curled up and out of breath on the bad days. I had a low level of nausea at all times and every joint in my body ached.

I’ve had a number of women asking me how I feel since my surgery and wanting to know very specific details. I decided to share my experience in the hope that it will be of help to other endometriosis and pelvic pain sufferers out there who are considering having a hysterectomy or who have been told they need one.

How long from being told that a hysterectomy might be my only remaining option to actually having the operation?

Two years. I was very upset at first. I really could not believe that a hysterectomy would be my only real remaining option. How could it be that in this day and age there are no other options available? I toughed it out for another 18 months during which things just got progressively worse. I would wake in the mornings feeling as if my pelvis was crushed. I bled daily regardless of the IUD I had. I would need painkillers on most days just to get going and it really did not touch the pain – it just dulled the aches. Last year, in the fall, I decided, that’s it! I’ve endured enough. I made an appointment at The Centre for Pelvic Pain and Endometriosis. I would have had my uterus removed that day if I could.

Do I leave my cervix or let it go?

Once I decided I needed my uterus gone I was very decided that I wanted to keep my cervix. I wanted to keep my cervix because I was worried that removing it might mess up my sexual function and lead to prolapse in the future since it is structurally part of your body’s suspension system and many believe it plays a role in sexual function. I finally decided to have mine removed because during a routine pap smear I tested positive for HPV16 which could possibly lead to pre cancerous cells and cervical cancer in the future. I also spoke with my surgeon who mentioned a study done on a group of women – half had their cervix removed and the other half not- They agreed not to be told if their cervix was kept or not. Follow up research showed no change in sexual function or increase in rate of prolapse. The only difference was that there was a 2% rate of cervical prolapse in the women who kept their cervix. I asked women I knew who had their cervix removed and they all said sex is pretty good without it.

What exactly got removed during my surgery?

I can’t stress how important it is to really discuss this with your surgeon and make very sure you understand exactly what will be removed and what the possible consequences might be and what procedure he or she will be using. There are a number of different ways of doing a hysterectomy. I did ask at every appointment just to check I am still on the right page and I read about it all as much as I could and about the specific procedure I would be having. I had a Laparoscopic Assisted Vaginal Hysterectomy. This means I had my uterus, fallopian tubes and cervix removed via my vagina Having my cervix removed left me with most of my stitches internally at the top of my vagina where they created what is known as a vaginal cuff. They did not remove any part of my vagina. I could not have any penetrative intercourse, enjoy a bath, or do impact exercise or lift heavier than 10lbs for a period of 8-10 weeks.

Worried about infection?

I did get an infection a few days post surgery when I came down with a headache, fever and body aches. I also started bleeding heavier. I had what is called Vaginal cuff cellulitis. An infection of the stitches at the top of my vagina. Ouch! A two week course of 2 different kinds of antibiotics took care of that and I was back on my recovery road a week after they found the infection. It did slow down my recovery a bit.

If you feel worried about anything after your surgery, act on it. I will also say that the infection was the worst part of my recovery.The sooner you get treatment for an infection the better. Everything else felt like my body was doing its healing and I needed to rest. Sleep was what my body wanted and I felt good when I listened and slept and I felt not so great when I ignored this need and overdid it.

For how long did I bleed post surgery?

I bled, on and off but very lightly, for 5 weeks.

Feeling Hormonal?

Although I could keep both ovaries and won’t be needing hormone replacement therapy, I had a few hormonal days. I would feel similar to what I’d felt during PMS and I felt hot and sweaty at times and a little emotional on some days but it was never severe and it really all feels very stable now – perhaps the most stable it has felt in over 20 years.

Digestion?

I had endometriosis removed from my intestinal Cul de sac (an extension of the peritoneal cavity between the rectum and back wall of the uterus). For the first two weeks post surgery digestion was not so good and pretty uncomfortable. Once I started feeling better and moving more it improved. It is the best it has been in a very long time.

Sex and feeling sexy?

There is nothing sexy about feeling bloated and sick all the time. I can remember many times feeling cramping and nausea after intercourse. That is all gone. Losing my cervix did not take away any of my ability to have any pleasure. Neither do I feel less of a woman. I feel more of a woman as I can enjoy my body.

Exercise?

I can finally return to exercise and really enjoy it. I’ve been going for long walks and they feel good. I feel strong. That took some time to build up to. I could not do this 3 or even 4 weeks post surgery. My pelvis would start aching and the bleeding would get heavier. I’ve also started to work on core function and strength 3-5 times a week . Being in constant pain depletes your body. I have energy now to live. I most certainly could not return to my exercise routine I had pre-surgery. I have to build up to it but I know it will be pain free and enjoyable. I would suggest seeing a pelvic floor physiotherapist. PF physiotherapist are wonderful at empowering you by assessing your core and pelvic floor function. It will reduce your chances of incontinence and prolapse post surgery by keeping your core and pelvic floor function balanced and healthy.

Plan to start a gentle exercise regime 3-5 weeks post-surgery. The movement will greatly help with recovery.

So was it all worth it?

Yes, it was more than worth it. My body has a peaceful quietness about it that I am not used to. My mind is clear and focused. I feel that I’ve moved through something and have emerged on the other side of it all. It also feels very strange. This is not my normal. Pain is. Out of breath is. Fuzzy brain and confusion is.

I still have some inflammation that will go with time and I am not completely pain free but there is a huge improvement in my quality of life. In percentage terms, it feels 80% better. The clarity is something I don’t take for granted and I am slowly growing accustomed to it. I feel lucky and I feel relieved. There was always a small part of me that thought perhaps I was making it all up. Endometriosis wrecks your quality of life. May there be a cure soon. I urge you all to speak up. I was diagnosed during the mid 90’s. No one I spoke to at the time knew what it was and not many know now. I mostly just lived with it. I think a support system would have been good. I had none. If you have endometriosis, find a clinic and specialist that really knows this condition and find a forum or group that speaks about the reality and offers support on an emotional level. Years would go by without me seeing a specialist while I would just be sticking it out. Ignoring it, hiding it. No-one would ask – “And how is your endometriosis” – because they did not know. And it made little sense to anyone anyway. Let people know you have a condition that really affects your life even though you look perfectly happy and strong on the outside. Endometriosis really affected every area of my life and I have seen it do that to many women around me. May more awareness lead to more funding for research so no woman has to suffer this in the near future.

Here some classic signs you might have endometriosis or adenomyosis or, as in my case, both:

1) Severely painful menstrual cramping

2) Extremely heavy bleeding

3) Abdominal discomfort and pain during menstruation.

4) Back pain before and during menstruation

5) Abdominal bloating

6) Painful sex

7) Dark large blood clots during menstrual bleeding

8)Painful bowel movements and / or urination, especially before and during menstruation